By Melinda Young
Hospitals nationwide have focused on handling overflow of COVID-19 patients needing acute care. They also are developing programs to handle post-acute medical problems discharged COVID-19 patients face.
- Unlike the flu, patients with COVID-19 might not recover quickly. Some experience neurological and other issues for weeks or months.
- One COVID-19 recovery program includes care navigators who provide transitional care and case management services.
- COVID-19 leaves some patients with long-term problems, such as dementia, lung damage, headaches, loss of smell and taste, vascular issues, sciatica, blood clotting, organ decline or failure, and loss of sexual function.
Through the winter of 2020-21, hospitals across the nation saw peak patient levels in crowded intensive care units (ICUs) and emergency departments (EDs).
Health systems responded to the early days of the pandemic with rapid response units that opened tents for overflow of patients and set up drive-through testing for COVID-19. Now, they are focused on setting up recovery programs to help patients who contracted the disease and recovered, but have developed chronic medical problems.
“A good number of people didn’t have physicians, so they’d get calls they were COVID-positive and wouldn’t know what to do,” says Gary Rogg, MD, FACP, co-director of the WMCHealth COVID-19 Recovery Program at Westchester Medical Center in Valhalla, NY. “The amount of anxiety this was creating was amazing. This was something very different from the flu. Irrespective of who gets the flu, you have similar symptoms, and in a week or so, you get better — unless you’re older or sicker.”
With COVID-19, clinicians received callbacks, week after week, that patients’ symptoms were not improving. “That gave us the idea that we should do something more for the community and provide some ongoing care and a remedy,” Rogg says. “One thing we came up with was an expedited response system.”
The organization created a dedicated group of specialists from each specialty to provide rapid consults and response. Care navigators provide transitional care and case management services, helping patients make appointments and following up with them.
“We had a COVID cardiologist, neurologist, and COVID renal nephrologist,” Rogg says. “It was becoming apparent that people were having ongoing symptoms, so we set up this model for people who ‘recovered’ from COVID, but were not over it because of a shortness of breath, hair loss, and brain fog.” Psychiatrists and rehabilitation medicine also are involved in the care of COVID-19 patients.
A year into the pandemic, clinicians have learned of a dizzying array of long-term and chronic health problems caused by even mild COVID-19 illness. These included neurological problems that mimicked traumatic brain injury and dementia, lung problems and tightness of chest, headaches, loss of smell and taste, vascular issues, sciatica, blood clotting, organ decline or failure, loss of sexual function, and more.
COVID-19 survivors report feeling too fatigued to walk to their mailboxes for weeks or months after they were discharged from the hospital. They talk about brain fog, skin scars, continual sweats and numbness, hair loss, depression, and symptoms of trauma, anxiety, and fear, according to the Facebook Survivors of COVID 19 support group. (More information is available at: https://www.facebook.com/groups/152944752923102.)
“What I find interesting is we had people come in from different age groups, male, female, different backgrounds, different races and ethnicities, and they all used the same term, ‘brain fog,’” Rogg says. “It’s fascinating that everyone describes it the same way.”
None of the post-COVID-19 patients experienced pre-existing cognitive symptoms. Some patients had been physically fit, but after the disease, they could not walk up a flight of stairs without shortness of breath and muscle aches. “It seems to cause a post-inflammatory response and modulates the immune system,” Rogg says. “We think a lot of these ongoing symptoms are because of dysregulation of a person’s immune system.”
The COVID-19 recovery program was designed with the expectation that most patients would be older, diabetic, or have emphysema or another chronic medical illness that led to more impairment. But they underestimated the damage the virus causes to everyone.
“We’re seeing healthy 20-, 30-, 40-year-olds coming in with these complaints,” Rogg says. “The thing that is not clear is how long it will last.”
The only experience to which clinicians can refer to is the severe acute respiratory syndrome (SARS) coronavirus outbreak in 2002. That disease was not as contagious as COVID-19, but it resulted in patients experiencing pulmonary symptoms two years later, he explains.
The virus’ ability to cause multisystem problems creates a major challenge for any recovery program. For instance, clinicians have to be aware of blood clots caused by the disease. “People with ongoing shortness of breath could have pulmonary emboli to the lungs,” Rogg says. “They could have diffusion abnormalities, where the lungs have these air spaces and sometimes are irritated, and oxygen comes across.”
When Rogg and colleagues created the unit, they recognized that one size does not fit all. “People have very unique presentations,” he says. “We set this up with the idea to provide very individualized patient care.”
Patients can call and speak with a designated navigator, who will help them make an expedited appointment with a dedicated primary care physician with experience treating COVID-19 patients. “We’ve been doing probably 20-30 televisits per day during the pandemic,” Rogg says.
Navigators review patients’ medical history to see what they need and which tests should be ordered. “The navigator will get you into each and every appointment and contact you in between to make sure everything is completed,” he explains.
There was a soft launch after Labor Day 2020, and an official launch in October 2020. “A good number of our patients are existing patients of the health network, and they’re automatically enrolled in the program,” Rogg says.
Early results from the program are positive. Patients express gratitude that someone is listening and recognizing their issues.
“One big complaint you hear from people is their shortness of breath months later,” Rogg says. “Then, they have an X-ray done, and the doctor says, ‘You’re fine; nothing’s wrong.’ It’s a big frustration to them.”
The COVID-19 recovery program gives these patients an avenue to specialists and follow-up. “One thing I try to teach medical students is to never judge someone by how they look,” Rogg says. “Some sit in the exam room and look totally fine, but if you push them, you’ll hear they’re having a huge change in their quality of life from COVID-19. It’s not just that they had the disease, and it’s not just they’re in a funk about it, but they’re really not feeling well.”
In some cases, tests come back negative and patients are reassured they just need more time to heal.
“You haven’t given them a treatment, but you’ve given them an insight that there’s nothing bad there by pursuing testing,” he explains. “The symptoms aren’t gone yet, but at least they have a brighter outlook.”